Yes i know, rubbish, i set this up to keep you all updated, but havent....many reasons why really, but none that i can explain! Anyway.....feeling better now so im going to update as much as i can before Evie wakes up!! Firstly, some good news....Dez and I are getting married next June! Something to look forward to, we are all sooo excited, and Lauryn cannot wait to be flowergirl!!
However, amongst the excitement and me wanting June to come along quickly....it dawns on me that Lauryns chemo will be finished completely a few months later in 2010 and then the excitement drains away and fear sets in. I thought i was strange to feel this, especially as everyone else tells me that they are looking forward to the end of treatment...until i spoke to another mum at the hospital last week. Her son is coming to the end of his treatment and she feels the same as I do, complete dread that thats it....treatment over, the best medicine has been used and thats that. Now, what begins is uncertainty...will it come back....the fear of the bone marrows being done and the phone ringing. The fear really is overwhelming and I still have a year to go. It has felt, so far, like chemotherapy, although nasty, has at least been certain. It has been like a security blanket for us, that it is fighting the leukaemia and keeping it away. I feel scared of what will happen when that is taken away.
Anyway....we are now on the last stretch of intensive chemo....the Delayed Intensification Therapy lasts 8 weeks, give or take a few wks for any delays due to low blood counts. We then move onto Maintenance treatment.....HOORAH!! I am told that maintenance means we only have to have weekly blood tests, monthly chemo (at pboro) and bone marrow every 12 weeks at adden.....oh yes....the rest of the treatment will be delivered orally by me at home (which makes me slightly apprehensive incase i do something wrong) but still....wayhay, no weekly trips to Addenbrookes!!
Lauryn did relatively well in her Capizzi block of chemo, she only missed 2 doses of it due to low count, but her weight did drop considerably, so she is very skinny again. However, in the 2 weeks break she had between blocks, she has managed to go to school every day (!) and has put on a over a kg of weight, so was starting this block relatively well!!!
Knowing that the chemotherapy will be getting less intense in August is a major relief to me. I really cannot complain as Lauryn has pretty much sailed through treatment so far....compared to other children I meet in the Day Unit....without too many problems eg walking problems, feeding tubes, major side effects etc. Having said that, the same problems keep cropping up at the moment....one being her tummy aches which seem to be getting more intense. She is now on codeine pretty much every day to cope with the pain, but our consultant, Myles has said they will think about doing a scan on her tummy if the pain worsens or she gets other symptoms....which obviously worries me no end.
Tonight, Dez has gone out with his workmates, so this would normally mean that Lauryn and I have a girlie night and watch tv with sweets and other tasty treats while we have the tv to ourselves....but unfortunately she was in agony with her tummy, so i gave her some codeine and she wanted to go straight to bed.... These are the small things that really get to me because we were both looking forward to spending proper quality time together but she is just too poorly.
Anther recent problem is that Lauryn is on a course of steroids for 2 weeks, with 1 wk break inbetween. Obviously, this is not the first time Lauryn has had steroids, hence the chubbster we bought home from Addenbrookes back in August last year, but these short sharp doses seem to be having awful effects on my little girl. She has become subdued, grumpy and aggressive...not my Lauryn at all, and I think its scaring her a bit. Lauryn isnt able to cope with such emotions and anger and its taking its toll on her. Thankfully, the side effects should subside next week when we have a weeks break, but this week is proving difficult. We have had bone marrow and IT chemo (delivered into spine under general anaesth) on tuesday, vincristine on wed and PEG (nasty injection into thigh muscle) on Friday. This has rendered Lauryn very nauseous and achy in her legs.
Roll On Maintenence!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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